Irene123
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Irene123 last won the day on September 13 2023
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13-year-old with facial and vocal tics, getting desperate
Irene123 replied to Irene123's topic in Tourette Syndrome and Tics
It is hard to say whether her tics are related to her gut issues or not, the gut issues started two years ago but tics started 6 years ago. We have worked with Dazz of Motor Tic Mastery, who is absolutely wonderful. He showed my daughter some relaxation skills and had several discussions with her about her condition, but she does not want to do anything. The tics don't bother her, so she does not want to put the effort (because it is a lot of effort) to deal with them and try to relax herself. So, we are not moving anywhere with the tics, if she ever wants to deal with them, she will have to relax herself and change her diet, I can't do it for her. -
13-year-old with facial and vocal tics, getting desperate
Irene123 replied to Irene123's topic in Tourette Syndrome and Tics
Hi JulesLou, Yes, i had a consultation with Dr. Gibson's office, but it does not seem to be the right thing for us. Their main thing is to change your diet to get rid of dairy/gluten and add red meat (which my daughter has never had and does not want to eat). They run stool and saliva tests to determine what you should and should not consume and I guess which supplements you need. I tried to get a clear answer as to what else a person might be asked to do other than change their diet but did not get a clear answer, all I was getting was that it all depends on your test results. I asked to provide examples of what people do based on their test results, but did not get a clear answer. This program is not for kids/people who have issues with food that they won't eat, this program is for those who eat anything and everything and just need expand or limit their diet according to their instructions. Well, if I could do that, I probably would not have a problem with my child since birth essentially, which is when her sensory issues with food began. So, we are not doing anything different right now other than eating Ezekiel flourless bread instead of whole wheat bread. We already don't consume any sweets or artificial colors/flavors for many many years. Dairy is very limited to lactose-free milk that I use to make homemade waffles with no sugar in the mornings. There is not much else I can cut out when my child eats such limited things compared to other children. All this advice from Dr. Gibson and other people on the internet is great for children who eat lots of different things with no issues. My daughter's tics are pretty much the same, some days are slightly better than others, but overall, they are steady, she just turned 14. It's very upsetting to know that her diet is probably the main factor for her tics, but she is not willing to expand it and there is nothing much I can do at this point to change that. -
If he only tics when he is anxious or excited, I would work on getting him relaxed at this point by whatever means that work for him, be it some breathing relaxation techniques or craniosacral therapy or something like that. Unfortunately, nothing has heled my daughter, she tics constantly from the moment she wakes up, she is refusing to make any dietary changes or do any relaxation techniques, it is as if she wants to tic even though she says she wants it gone. The only thing I would advise against is eating any artificial colors/flavors whatsoever, no exceptions, and reducing or eliminating altogether sugary foods. My daughter has not had candy in years, and she is fine about it, she is so used to not eating it.
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Thank you for your many interesting suggestions, Potatoe. We will look into doing a gut test since it is the easiest thing to accomplish with my daughter I already give her 2,000 units of vitamin D per day as I know she was low on it a few years ago when we last tested it (as most of us are). I know she is deficient in iron as that was tested a few years back and she does not eat any iron rich foods like red meat or dark greens, so I will think about giving her iron supplements, but I am a little concerned they might constipate her. Her digestive system is very sensitive as is, so I am afraid to disturb it in any way. But Magnesium usually softens the stool, so perhaps that would counteract the iron? When we have a blood test next time, I will have them check her Manganese levels (or trace minerals). On the broccoli sprouts supplements, I used to take Brocsprout 2 myself, which I think is the same or very similar to Broq? It does make you a little gassy. Have you ever heard of Dr. Piper Gibson and if so, what are your thoughts on it?
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Chemar, who did you use for holistic allergy treatment?
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I also noticed that allergy medication like Claritin makes my daughter's tics worse. Maybe try some natural allergy relief stuff like Boiron allergy calms tablets (I have not tried them yet so can't speak to their efficacy). In terms of food, we have been completely sugar and artificial colors/flavors free for years and have not seen any results. A lot of people say to go gluten free, it is very hard to do, but if your son can do it, then definitely try it. Since he has anxiety and is sensitive, I would look into craniosacral therapy which is very relaxing and might help him with tension in his body. We just started it and we like it so far. I am just as desperate as you but we have been dealing with this for 6 years since my daughter was 8, and it is very hard to have a child who tics and you can't help him, I know. Calming the body and mind in my view is the best thing for him
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I tried it for my daughter out of desperation as well and did not see any improvement. I think you can continue giving it to him just to see if it makes a different if he does not mind taking it.
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13-year-old with facial and vocal tics, getting desperate
Irene123 replied to Irene123's topic in Tourette Syndrome and Tics
Hi JulesLou, thanks for your response. I had a feeling it will be around $5000, I wonder if it includes lab fees or is that extra. I am having a consultation with them on Oct 2 and will report back what I find out. From what I understand, they order lab tests, I assume OAT urine test and food sensitivity blood test and then determine things you can and cannot eat and if you have candida for instance, tell you how to get rid of it. It is very pricey of course, which is why I would like to find out first what their treatment plan would look like, so that I would know if my daughter would be able to follow it. In the meantime I am following Sheila's advice and purchased scent free home products, body wash, soap, detergent, dish soap, deodorant. I wonder how people feel about Ezekiel bread which is technically not gluten free but is not the same gluten bread that we try to avoid for kids with tics. It is very healthy and I am wondering if it is healthier to eat than real gluten free bread or is is still something to stay away from in the quest to reduce tics? -
13-year-old with facial and vocal tics, getting desperate
Irene123 replied to Irene123's topic in Tourette Syndrome and Tics
Has anyone tried craniosacral therapy? I am looking into this and will try it for my daughter in the next month or so and will report back with any updates. -
13-year-old with facial and vocal tics, getting desperate
Irene123 replied to Irene123's topic in Tourette Syndrome and Tics
I've contacted one naturopath in my area and his method is to first detoxify by using some number drops and then to deal with detoxing from the various vaccine the child has had that be believes could be the problem. I am not sure this is the best approach and think the treatment of the gut might be a better approach which is why I am considering using Dr. Gibson but wanted to see if anyone has used her and what the results were. -
13-year-old with facial and vocal tics, getting desperate
Irene123 replied to Irene123's topic in Tourette Syndrome and Tics
Atex, after your daughter's digestive issues were resolved, did her tics get better? I read a lot about how tics are related to the gut so if gut health is improved, tics should improve too. Did you do a urine OAT test for candida/leaky gut? -
13-year-old with facial and vocal tics, getting desperate
Irene123 replied to Irene123's topic in Tourette Syndrome and Tics
Has anyone tried Dr. Piper Gibson? I have looked at her videos and she has a holistic approach to healing the gut, which sounds right to me. i just wanted to see if anyone has worked with her and what they did and how it worked out for them. -
Chemar reacted to a post in a topic: 13-year-old with facial and vocal tics, getting desperate
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13-year-old with facial and vocal tics, getting desperate
Irene123 replied to Irene123's topic in Tourette Syndrome and Tics
Sheila, thank you so much for your suggestions and the resources you have provided. We removed eggs from her diet for two months over the summer, it did not change anything, we also went gluten free a few years ago and it did not have any effect either. I will provide an update in a few weeks if there are any changes for the better, hopefully. -
Thanks for all the info, Atex, I really appreciate it. We have tried self hypnosis and relaxation but did not see a difference, perhaps she has not diligently done the relaxation but my constant reminders to do it only caused more aggravation, so I don't think it is the right avenue for us unless she really wants to do it on her own, which at this point I don't see happening. It's funny you mention Dazz because I have been looking at his videos for two years now, he seems so calming. We have a consultation scheduled with him this week and if my daughter agrees to proceed with him, we will definitely do the 6-week session program, and I will report back with any updates about it. Given that Dazz has gone through it himself, I think he is best equipped to help people with Tourette's. We don't have a screen time issue, my daughter hardly uses any electronics, only for research, she is an author (she is working on her third book now), so she does research on her Ipad for her books, that's about it, maybe some shopping here and there I had a few CBIT specialist names provided to me by the Long Island Tourette's association and have left messages for a few of them, have not heard back. My daughter does not do the competing response for vocal tics that much on her own anyway, so as I mentioned before, I don't think CBIT would be very helpful to her. Your CBIT experience is what I am afraid of, therapists just trying to take advantage of families. We will definitely try a naturopath, I just need to find one in Queens, LI or Manhattan and see what they can do for us. Thanks for the air and water suggestions as well.
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13-year-old with facial and vocal tics, getting desperate
Irene123 replied to Irene123's topic in Tourette Syndrome and Tics
Thank you. Yes, the acid issue we've been dealing with for the past 1.5 years is not normal for sure. It seems to be triggered by certain foods and does not happen on a daily basis. I looked at the symptoms of candida overgrowth in the gut, they don't really apply to us, but giving a probiotic on a daily basis won't hurt, so I will start doing that. I used to give her probiotics and don't remember why I stopped. We have not got far with gastroenterologists on her stomach issues beyond pepcid, so we will try a naturopath as another parent here has suggested.